September 6, 2018. Yesterday had been a tough day for Dad, and Mom and I were a little anxious when we arrived at his room at 7:50 A.M. As we expected, Dad was sleeping. We noticed that his chin and pillowcase were soiled, and I couldn’t tell if it was pudding or blood. We chatted briefly with the night nurse and learned that she had used pudding as the delivery medium for Dad’s night meds. I wished that she had taken a couple of moments to wipe away the pudding on his face. It was now dry and very difficult to remove. She also said that he had had a very large bowel movement last night, which I hoped alleviated his bloated stomach problems that we had noticed yesterday.
Dad’s food tray arrived shortly after 8:00 A.M., but I couldn’t feed him until he was more alert and repositioned in the bed. I used Dad’s call button to summon assistance from the nurse or aide (CNA).
At 8:15 A.M., Audrey (the PA) and Dr. Leung from cardiac electrophysiology stopped by. Audrey had visited yesterday and had told us that Dad’s current heart condition was not contributing to his current situation. She had brought Dr. Leung today to confirm yesterday’s assessment.
At 9:00 A.M., Nakita, Dad’s nurse, and her nursing student came in to administer Dad’s morning meds and reposition him in his bed. I had been unable to rouse him and was open to their suggestions. Nakita tried rubbing his chest, which seemed to annoy him but didn’t wake him. Once again, Nakita was unable to get Dad’s temperature.
Right after they finished taking his vitals, Leslie walked in for Dad’s physical therapy session. Mom, Nakita, and I were shocked when Dad said hello in response to Leslie greeting him. Unfortunately, the interaction ended with hello, and Leslie was unable to rouse Dad enough for him to open his eyes. She said that she would try again later today. Having been unable to administer his morning meds or take his temperature, Nakita left the room. Like me, she had been a tad optimistic when Dad seemed to respond to Leslie.
Dr. Ashley Thomas, the attending physician, entered the room at 9:30 A.M. She said that Dad’s WBC count had moved from the 14-15 K range (slightly high) where it had been for the past few days to 32 K, and she suspected that he was septic. In response to his latest labs, she said that they had started him on a different antibiotic and that they were going to also test him for CDiff. When I asked about the diuretics, she said that nephrology wanted to give his kidneys a rest yesterday but that they might start them again today. Before she left the room, the doctor said that she would probably have Dad’s tunneled PICC line redone in case it might be the source of his infection.
The doctor returned to Dad’s room a few minutes later with Nakita and the nursing student in tow. Dad seemed to be in a lot of distress, which the doctor thought might have been caused by a full bladder. She planned to scan his bladder and provide him with relief if that was the case. I asked about nourishment because he hadn’t eaten much since lunch yesterday. She said that she did not want to insert a nasogastric (NG) tube now because Dad had a lot going on at the moment.
After the bladder scan, Nakita wanted to bathe Dad, so Mom and I went to the 6 North waiting room. We were seated for only a moment when my parents’ friend, Sharon, texted me to get an update on Dad’s status. I told her that he had not improved since yesterday and that he seemed a bit worse.
At 10:30 A.M., while Mom and I were sitting in the waiting room, the doctor sat with us and said that Dad’s distress had not been caused by his bladder, which was bad news because the problem could not be easily remedied. She also said that because the antibiotic required to combat CDiff must be administered orally, she had decided to insert the NG tube because Dad was not able to swallow pills. Although she would not know for 24 hours whether he had CDiff, she needed to start treatment now in case he did. She also said that they would give him some morphine to keep him comfortable.
When Mom and I told her that we would be leaving the hospital for lunch, she advised us to eat here. We found this guidance very unsettling, and I texted that information to my parents’ pastor.
Mom and I left Dad’s room while the nurse inserted his NG tube. Around 11:00 A.M., Sharon arrived with a box of cookies and pastries from a local bakery, saying that times like this required sugar. After waiting for what seemed like a long time, I excused myself and peeked into Dad’s room to see if we could return, which was a mistake. As I opened the door slightly, I saw that a couple of nurses were struggling with Dad as he whimpered and tried to push them away. It was a heartbreaking sight that I’ll probably never forget, although I hope that in time I will. I silently closed the door and returned to the waiting room and told Mom that they weren’t yet finished with Dad.
Around 11:30 A.M., Pastor Brian, the associate pastor, entered the 6 North waiting room. The four of us discussed how it was as important to die well as to live well, but Mom wasn’t willing to admit that Dad was dying.
When Pastor Tom joined us shortly after noon, Sharon left. Pastor Tom insisted that Mom and I eat something, but we weren’t hungry. After rejecting the pastors’ offers of food from various local restaurants, we finally settled on yogurt for Mom and hummus for me from the hospital cafeteria. The pastors supplemented our lunch choices with energy bars and candy. Because of Dad’s potentially contagious condition, the nurse suggested that we eat our lunch in the waiting room.
A little before 3:00 P.M., our friends Earl and Marilyn arrived. Before we had learned of Dad’s current condition, Marilyn had told us that they wanted to visit Dad. I didn’t ask them to change their plans because they are such good friends, and I thought that Mom would benefit from their company. The doctor sat with the four of us to discuss Dad’s situation. She said that she had already contacted the Medical ICU (MICU) doctor. Because Dad’s blood pressure was dropping, he would need the type of pressors that the MICU could provide. We had a difficult discussion about whether or not to send Dad to the MICU. Mom felt that we should do whatever we could to help him live. I thought about what I believed that Dad would want. I was not convinced that a good outcome was in his future, even with MICU. If the end of Dad’s life was imminent, I wanted to let him go peacefully. I did not want the last hours of his life to be filled with the torture that I knew that he would endure in the MICU. However, Mom was unconvinced, so the doctor encouraged Mom to sit with Dad for a while. Although I knew that I was right, part of me wanted to be convinced that I was wrong.
Shortly before 3:45 P.M., we returned to Dad’s room where we received another update on his condition from Dr. Thomas. In addition to his other challenges, she said that his hemoglobin was now down to 5.8 (13 being normal), which meant that in addition to pressors to raise his blood pressure, he would need a couple of units of blood. As if this news wasn’t bad enough, she said that he was also bleeding from his intestine. As we stood in the center of Dad’s room, I hugged Mom, and we agreed to start comfort care. I told the doctor that our family was very small and very close. We loved this man dearly, and we now felt that we had to let him go. Through her tears, Dr. Thomas said that she thought that we had made the best decision for him.
As soon as we had made our fateful decision, Nakita and Amber, the charge nurse, started removing feeding tubes and oxygen. They also stopped Dad’s antibiotics and other medications. After withdrawing his medications, they began administering pain medicine and medication to slow his internal bleeding. The nurses cleared the room so that we could sit with Dad in private, promising to check in on us occasionally to see if we needed anything. The doctor said that we could use this time to settle any affairs or issues with Dad, but we didn’t have any. We were communicators and always told one another that they were loved. For the most part, we sat in painful silence and held Dad’s hands and kissed his face.
At 4:15 P.M. Drs. Autumn Stratton and Michael Janes with palliative care stopped by. They said that with our permission, they would like to move Dad to the palliative care section of the hospital, where the nurses and staff were trained to work with end-of-life patients and their families. Mom and I agreed that it seemed like a good idea. Dr. Stratton said that she would check to see if they had any available rooms. As strange as it might seem, Mom and I didn’t understand the hospital process of dying and asked to speak with one of their social workers to clarify what was expected of the hospital and us. While Drs. Stratton and Janes were still in the room, Linda Parish, the social worker, visited us for a few minutes.
At 4:55 P.M., I told Nakita that we were leaving for a while. She said that they were cleaning a room in ST4. He would be moved soon, and she would call us with a room number when she knew it. The short ride home was difficult. We didn’t know how long Dad had, but we already felt the void that he would leave in our lives. I had been crying and my eyes felt like I had thrown salt in them, and Mom said that she felt the same way. Alternating waves of nausea and emptiness seem to flow over us.
After consuming a glass of wine and some mixed nuts, we decided to return to the hospital. We left home about 6:30 P.M. As I was backing out of the garage, Nakita called to tell me that Dad was being transported to room STC 484. We arrived at the STC area just before the 7:00 P.M. shift change. Dad was still on a gurney that was parked outside of his room. He was breathing when he was brought to the room. After he was moved from the gurney to the bed, the nurses introduced themselves and said that they would return in a few minutes. We sat silently for a few minutes. Looking at Dad, his color seemed so different, and then Mom said that it didn’t look like he was breathing. I put my ear to his chest and couldn’t hear his heart. I took off my glasses and held them over his mouth, but he didn’t produce any noticeable fog. I opened the door and caught an aide as he was exiting the room across the hall. I told him that it didn’t seem like Dad was breathing. He ran down the hall to get our nurse and aide. They both listened for a heartbeat but heard nothing. It seems that he must have passed when they moved him from the gurney to the bed. We stayed in his room for another 30 minutes, and as we were leaving, the hospital chaplain intercepted us in the hall. We returned to Dad’s room to discuss how to proceed once we engaged a funeral home. I gave my father a final kiss and hug, Mom said goodbye to her husband of almost 70 years, and we left the hospital. As much as we hated visiting the hospital, it devastated me knowing that we wouldn’t be returning to see Dad.
I felt a hollowness that I had never known before, and I could only imagine how my mother felt losing the love of her life.